Infusio Day Thirteen – Stem Cell Procedure Day

After taking the higher dose of Amitriptyline I had finally slept through the night, and woken without nausea and without feeling horrifically unwell for the first time in over a week, I was so happy to feel alive again! It had been a hard decision to increase the medication, but it really felt like confirmation that my body was just not able to cope yet at such a low dose, and that a much slower taper would be needed if I wanted to continue to try and reduce the amount any further. It was a very early start so I was relieved to have enough energy to get up and ready for the day ahead. I had been told to wear dark clothing to account for any post-procedure bleeding, so I decided to wear a black t-shirt and leggings, and we were able to walk the 10 minutes to Infusio, which was lovely and peaceful as no-one else was out and about yet. We headed straight to the procedure suite on the first floor where the operating rooms were, and Dr Kim, Dennis and Dillon were already there getting everything prepared. We chatted with Dennis for a while, and he took some photos and video of me and asked if I would mind if he filmed during the procedure. I wasn’t initially thrilled at the prospect; my face was incredibly swollen after three weeks of IV treatment ,and I looked as exhausted as I felt, but I kept in mind how useful it had been to me to see other people going through treatment when I was considering Infusio, and decided that it was the right thing to do, to put my own vanity aside for the chance that it might be helpful to anyone else. I then got a sedative injection before being prepped and taken into the operating room, where I lay down on the table on my front, with my head resting on my arms. Infusio tries to make the whole procedure experience as positive and calming as possible, and one of the ways they do this is by encouraging you to have your own music playing throughout. Now I wouldn’t normally subject other people to my musical taste, but it did sound like a really nice idea so Alex had kindly created a playlist for me of some of my favourite and most comforting songs. Dr Kim and the nurses were very polite about having to do the procedure to a backing track of Taylor Swift, and it did make me feel a lot more relaxed, so I was very appreciative of the extra effort to make me feel as comfortable as possible.

Dr Kim started by applying numbing cream all over my back, and then injected numbing agent into several points with a really big needle. She warned that this part would be a bit painful, and it certainly did pinch but was nothing unbearable. Once this was done we were ready for the actual Stem Cell harvesting to begin. The cells are harvested using a cannula syringe, which collects fat cells from the lower back and sides of the patient, and it only took just over an hour for the whole collection to be complete. The time passed quickly, and it truly did feel like such a positive and encouraging atmosphere throughout the whole procedure. After three weeks I felt like I had gotten to know the staff so well, and it really does feel like everyone is rooting for you and excited for you to move forwards. Unsurprisingly I did find it to be pretty painful, but I was kept distracted by talking to everyone, and I was really happy that Alex could be in the room with me. About halfway through the procedure I was injected with more of the numbing agent, and this helped the discomfort and pain a lot.

Once enough cells had been harvested, I was turned over and numbing cream was applied to my stomach in preparation for the Stem Cell gut injection. On Dr Kim’s recommendation I had decided to get the additional injection, as my gut had been so severely affected by getting Lyme in addition to having Cyclical Vomiting Syndrome & Coeliac Disease, and I didn’t want to risk not having enough new Stem Cells to adequately heal. Once the Stem Cell paste was ready it was injected into my stomach, and this was probably the most painful part of the whole procedure, but it was over so quickly that it was totally fine. I couldn’t believe I was finished, and overall it had been nowhere near as bad as I had feared it might be, so for that I was both happy and relieved.

The nurse helped me put on the bandages to control the bleeding, and then a corset to secure, and I was given a prescription for tramadol to manage the post-procedure pain. I was then fixed up with an IV line and received a bag of mannitol, which helps make the cells malleable and allows them to get into the central nervous system, followed by saline to flush everything through. Whilst I rested the cells were harvested in the incubator and then processed in the centrifuge, which took around an hour and a half. When Dr Kim brought my new Stem Cells back in, they were zapped with a laser before being given back to me via IV. The really cool part about this was that Alex was able to actually give them to me through the IV, and that was a really special moment for both of us.

I was told that they had managed to harvest ninety-three million Stem Cells which I was initially a bit unsure of, as I had heard of lots of people getting over one hundred million, but Dr Kim reassured me that it was more than enough for them to properly work, and that people had fully recovered with ‘only’ receiving twelve or fifty million, so that made me feel a lot better. It only took around ten minutes for the Stem Cell IV, which was followed by a Myers, and I was able to get this upstairs in the Penthouse. Finally, the last part of procedure day was to complete forty minutes in the Hyperbaric Chamber, which I did have some trouble actually getting into, but after the session was over I was completely finished for the day!

By this point I was feeling extremely sore and swollen all over, so we Ubered back to the hotel and I spent the rest of the afternoon recovering, with Alex changing the dressing and bandages for me every couple of hours. I desperately wanted to be outside, so we found a spot by the pool in the shade, but it was very difficult to find a comfortable position as I was in total agony lying down and every time I moved even slightly, so I made do as best I could and dosed up on the painkillers whenever I was allowed. The most surprising thing was that I actually felt incredibly energetic and totally clear headed, although I wasn’t sure if it could be totally attributed to the Stem Cells, as resuming a higher dose of Amitriptyline had undoubtedly made me feel so much better as well. I remembered Dr Kim talking about how the cells often had an immediate anti-inflammatory effect, so I was feeling extremely encouraged by this. Even though I was in a lot of pain from the procedure, I was determined to make the most of feeling so much more alive, and so went out for our first non-room service or Postmates dinner since starting treatment. We went to Il Pastaio, a beautiful Italian restaurant right next to our hotel, which I had wanted to visit since walking past and recognising it from KUWTK (don’t judge me, when you’re sick you have a lot of time to watch reality TV!), and had the most perfect dinner to celebrate. They were amazing with allergies and able to make me a delicious gluten-free and garlic-free pasta dish from scratch. By 8pm I was seriously flagging from sitting up and the pain was getting a lot worse, so after taking more painkillers and another dressing change I got ready for bed. I knew it was going to be challenging to find a comfortable sleeping position, as my back and sides were extremely sore from the Stem Cell harvest, and the top of my stomach was sore and swollen from the injection, which didn’t leave many obvious options. With the help of some pillows for support I was able to settle on one side, and hoped the Tramadol would knock me out to allow me some decent sleep.

About Me

Hi I’m Lottie, I’m a twenty-something year old living in London and in 2015 I was diagnosed with Lyme Disease. I post about how I manage my illness, and the treatments, lifestyle and diet changes I have undergone on my journey back to health. Sharing the highs alongside the lows, I aim to give an honest and authentic insight into living life with chronic illness.